Waiting for answers as rare eye cancer cases in small NC town continue to grow

Reported cases of a rare eye cancer in Huntersville continue to rise as health experts hope to learn in the next few months more about what’s afflicting the small town north of Charlotte.

In April, when the town signed contracts for those studies, 12 cases of ocular melanoma were known. That number has now grown to 18, said Dr. Michael Brennan, a retired ophthalmologist from Burlington who’s helping coordinate the work.

The cases were diagnosed after 2000 in people who lived, worked or spent a substantial amount of time within a 15-mile radius of downtown Huntersville but outside Charlotte.

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Brennan credits the growing numbers to the spread of social media and to including cases diagnosed in a wider window of time. “It supports the idea that having community awareness is probably a good thing,” he said.

Ocular melanoma is diagnosed in about 2,500 adults a year, or 5 to 7.5 new cases in 1 million people. Victims are most often men, and odds of getting it increase with age. In some cases, the disease may be fatal.

But nine of the first 12 victims identified in Huntersville were female, and six were younger than 30 when diagnosed. Three patients had attended Hopewell High. Four of the victims identified by April had died.

Even though Huntersville has doubled in population since 2000, to about 52,000, the number of cases is still more than would be expected, Brennan said. He’ll update town commissioners in July.

Studies, aided by a Charlotte cancer center, are underway to explore whether environmental exposures or genetic traits can explain some of the cases. And new patients keep appearing.

Among them is Steve Durant, 56, who lived in Mooresville for nearly a decade before moving to Murfreesboro, Tenn., in February.

Durant, a retail IT consultant, had been diagnosed with a nevus – a usually harmless growth similar to a freckle – in his left eye in 2010. A May 21 trip to LensCrafters for new glasses launched a sudden whirlwind of tests and treatment of the eye.

Steve Durant

Courtesy of Steve Durant

An optometrist spotted something that should be checked out. That led to more tests, followed by a melanoma diagnosis. On June 6, a retina surgeon implanted a small plate that delivered a concentrated radiation dose to the tumor.

While waiting for surgery, Durant for the first time had noticed some of the tell-tale symptoms of the condition, including black spots and cloudy vision. Surgery also temporarily hurt vision in the eye, but that’s improving.

Doctors will continue to evaluate his eye. Durant worries that the cancer will spread to other parts of his body.

As he learned more about ocular melanoma, and the mystery of Huntersville, he thought back to his years in Mooresville and potential sources of his cancer: the power lines over the trail where he walked his dog; the nuclear power plant on Lake Norman; even the Doppler radar installation in Huntersville.

Finding a cause, he concluded, might be harder than finding a needle in a haystack. And it pales in comparison to what’s happening inside his own body.

“I’d rather have a cure than a conclusion,” Durant said. “To me, the bigger issue is the metastasis, if it gets out of the eye. That’s probably a bigger concern.”

Genetic tests

State health officials have said the number of cases of ocular melanoma isn’t unusually high for Huntersville or Mecklenburg County as a whole.

A 2015 state report said most of the victims that were then known had reported high exposure to ultraviolet light, such as through sunburns or tanning beds, which has been associated with the disease. Some health experts dispute the link to UV light.

In April, Huntersville commissioners dug deeper with a $100,000 grant from the state legislature. A consortium of medical experts – including Brennan and specialists from UNC, Duke University and Philadelphia – helps guide their work.

The town board approved a $14,600 contract with a Pennsylvania firm, Geodesy Inc., that will reconstruct the victims’ lives, by time and location, to seek common denominators that can then be compared to environmental factors. That work is expected to be finished in late summer or early fall.

A second contract, for up to $59,000, will pay for tissue tests at Columbia University Medical Center to assess why cells turned malignant.

Charlotte’s Levine Cancer Institute, meanwhile, is helping the Huntersville patients and their families learn whether they carry a hereditary predisposition to the cancer. Levine is part of the Carolinas HealthCare System.

In hour-long interviews, counselors take detailed family histories. Blood samples are then taken and sent for analysis – in the Huntersville cases, to a San Francisco lab, Invitae Corp., that specializes in genetic testing.

Levine offers genetic counseling free to patients, but in this case is saving those from Huntersville trips to Duke or to a Philadelphia hospital that treats many ocular melanoma cases.

Levine plans to see all the Huntersville patients who participate by Aug. 1, and hopes for results by the end of summer.

“This is the future of personalized medicine: identifying in an individual whether they have a marker mutation that predisposes them to it when their sibling didn’t get the gene and doesn’t have the cancer,” said Lisa Amacker North, a genetics counselor and operations director of Levine’s genetics department. “This is really where medicine is going.”